Two Book Reviews: Neurotribes by Steve Silberman & Wonder by R. J. Palacio

NeuroTribes by Steve Silberman

Behold, the newest entry into my Top 5 books: NeuroTribes by Steve Silberman. Rounding out the Top 5 (not including the Bible) are in no particular order: Pride and Prejudice by Jane Austen, John Adams by David McCullough, Persuasion by Jane Austen, and Team of Rivals by Doris Kearns Goodwin. You can see this book is in pretty rarefied air :) I had planned to read this book after I was done with classes but I couldn't wait. I'm glad that I didn't.

There's been a lot of press around this and the buzz in the autism community has been intense. At least those in the neurodiversity circles, I'm pretty sure that those in the Autism Speaks / anti-vaccine camp aren't quite as effusive in their praise due to the main themes of the book which are:

THERE IS NO AUTISM EPIDEMIC.

AUTISTIC PEOPLE HAVE ALWAYS BEEN HERE.

For an amateur history buff like myself, his research on how autism came to be diagnosed was fascinating. It started with Hans Asperger first diagnosing the condition in the early 20th century but his research was lost during World War 2 when the Vienna clinic in which he was working was leveled by the Allies. Asperger's definition of autism was much more like the current definition; that is a spectrum and encompassing many different manifestations. Almost at the same time, Leo Kanner was working in the United States with children who exhibited patterns of repetitive behavior and social deficits. He worked hard to narrowly define autism as a disorder that is restricted to the most severe cases, as well as only a childhood condition, dubbing it "early infantile autism." Unfortunately, Kanner's research survived, unlike Asperger's, and was the dominant narrative of autism for decades. Because of this definition, many many children (and adults) did not receive the services that they needed and were misdiagnosed with conditions like schizophrenia and childhood psychosis.

For me, the most heartbreaking stories were the ones about children who were institutionalized, which was the standard practice in those days for any child who showed signs of a disorder. I mean, it goes without saying that you would need to pry Elias out of my cold dead hands if anyone ever wanted to institutionalize him, but this is also not the common wisdom of the day and parents would have been placed under an enormous amount of pressure to send their children away since there weren't resources readily available to help them. Reading this book also made me wonder how Elias would have been diagnosed (if at all) 20-30 years ago since he doesn't fall under Kanner's narrow definition.

Two quotes that I found interesting:

Researchers at the University of Edinburgh discovered in 2015 that genes associated with autism are also associated with higher levels of cognitive ability - particularly problem solving tasks requiring nonverbal, hands-on intelligence. (273)

Elias's strength lies in his ability to problem solve. He's always been this way since he was very small.

It turned out to be an idea as old as Asperger's notion that people with the traits of the syndrome have always been part of the human community, standing apart, quietly making the world that mocks and shuns them a better place. (450)

This one makes me pause. As a society, we are so unwilling to accept people who are different than us even though the diversity in this planet is immense. We want everyone to be like us, act like us, LOOK like us that when they don't, we ignore them and don't put the work in to befriend them. This isn't just true for autistic / NT people, it's true across race, religion, nationality, as we are are seeing on a national level these days.

It's a fascinating book, no matter whether or not you love an autistic person. It would be a great gift for a parent whose child was recently diagnosed!

WONDER by R. J. Palacio


So, I cried through at least half of this book. Some parts are legitimately sad. It's the (fictional) story of August Pullman, a 10 year old who was born with a severe facial abnormality. He endured multiple surgeries and had been homeschooled up until his 5th grade year when his health had stabilized to the point that he was able to attend school. They place him in an expensive private school in NYC called Beecher Prep. This is a YA book, but like most YA books, anyone can glean something significant from it. The overarching theme is choosing kindness, not simply choosing not to be mean. There is a difference.

I probably would not have done so much crying had I not had a child with special needs who is also vulnerable to bullying. Our society is just not kind to people who deviate from any norm, tragically. I'm making Ben read this one and we've had some good conversations coming out of it. I love being able to talk about books with my kids!

progress

So this is a brag post. I'm just so thrilled with how far Elias has come in the last 3 months. 3 months!! And we've seen so many new developments from him. I thought I would post a session note from one of his first sessions with his new SLP (speech and language pathologist) and the one from today.

Week of 9/14/15
Subjective: Elias took a few minutes to prepare to leave for his therapy session. When he showed he was ready, he walked nicely to the room and followed directions to sit at the table. Elias did a great job following the schedule of the session, becoming disregulated a few times demonstrated by getting up from the table and running to the beanbag/mom. Elias was shy at times, but participated in all of the activities planned by the clinician. He followed the directions within the session very nicely, requiring minimal prompts to be redirected. Elias imitated many requests after the clinician, independently requesting approximately 20% of the time given a visual model (i.e. “I want green”). By the end of the session, Elias caught on and avoided requesting new items in order to avoid having to express his wants. Elias had difficulty sticking to one activity for more than 3-5 minutes, wanting to move on to the next activity quickly. He interacted appropriately with the clinician while reading the dinosaur book, fitting train cars together, and singing “The Itsy Bitsy Spider”.

And here's the one from today (12/14/15):

Elias had yet another FABULOUS session today! He has been doing such a great job the past couple of weeks! He was imitating everything today and then generalizing those phrases to independently spontaneously use them within the session (i.e. let go <therapist name>, my turn, I want blue balloon, more balloon, etc.). Elias shared his attention for about 10 minutes with the balloons and pump, putting them away independently and calmly when he was done and saying all done given minimal support. He initiated getting out the musical instruments and allowed me to play along with him! There were two drumsticks where Elias had one and I had one. Elias kept wanting to take my drumstick and instead of getting upset and trying to grab it while crying, he turned it into a purposeful game! He would try to take the stick and when I would take it back he started giggling. I would then put the stick down and get "distracted" while Elias would make a run for it, giggling when I got the stick first. He had wonderful engagement throughout the entire session only needing a few quick breaks here and there. 

I am so proud of the progress he has been making! 

I absolutely adore his SLP -- she is so good with him: she is patient and willing to follow his interests even if it conflicts with what she had planned for the session. This is one of the hallmarks of the DIR/Floortime method that they use at his school, so not surprising, but really refreshing to see it practiced and also the results that it produces. And my boy works so incredibly hard; I can't get inside of his head but I really think it must be so gratifying to him to see his hard work paying off.

He still has a significant speech deficit. He's probably at a 2 1/2 year old speech level according to charts for typical children. But he's covered about a year's worth of language development from where he was before he started in three months! I'm so proud of him.

A Practical Practicum

I'm starting a practicum this January that I could not possibly be more excited about. For those not in academia (I personally had no idea what a practicum was before grad school), a practicum is work that you do out in the real world for academic credit. For me, that means that I do 100-120 hours of work to get 2 graduate credit hours. And I am going to do this unpaid. A summary of a conversation with Benjamin about this:

B: Wait, you're going to work for them?
Me: Yep.
B: Are they paying you?
Me: Nope. I'm actually paying my school so that I can work for them.
B: That's stupid.

I have a Faculty Supervisor who will oversee my work and a Site Supervisor at the actual work place, someone who is knowledgeable about what I will be doing, not just someone who is going to be a contact person. I have to write a few things about learning experiences and that sort of thing. But yes, I will be paying a third party so that I can go to work for free.

Sounds like a raw deal, right? So why would I be so excited about this?

A little background:
I was looking at the bio's of the therapists and staff at Elias's school earlier this year and noticed that several of them either were graduates from the Erikson Institute or current students. I looked them up because I had never heard of them and saw that it was a Graduate School for Child Development. I filed that information in the back of my head and plowed through the next few months of my semester. When it came time to register for classes for the spring term, I looked at the offerings and was underwhelmed, so I started thinking "Maybe I should find an internship or maybe do this practicum thing." Problem was that I had no idea where to start looking for a practicum. The initial search of our online job hunting service through UIUC yielded one possibility at the Chicago History Museum. I was planning on applying to that (had even written out the cover letter) when I had a thought that maybe I should look to see if I could find something to do at the Erikson Institute. I didn't even know if they had a library, so I went to their site and found out that they do. On a whim, I sent the following email to the Library Director:

My name is Kindra Morelock and I'm a Graduate Student in the Library and Information Sciences program at the University of Illinois at Champaign-Urbana. I am exploring practicum possibilities for the next semester and I am interested in your library. My youngest son was diagnosed with autism in April and now attends LEEP Forward, a therapeutic preschool for children with developmental delays in the West Loop. Judging from the biographies on his therapists and aides, I know that many of them come from Erikson. So, I have a personal interest in assisting you to fulfill your mission to train up therapists, social workers, and other care givers for children with developmental differences.

Professionally, I am interested in Data Curation as well as Archives, chiefly in the areas of metadata and preservation. I am currently taking classes the Foundations of Data Curation as well as Digital Preservation. I have taken classes on databases (as well as having extensive professional experience), creating metadata (Dublin Core, METS, PREMIS), and Python. I am planning on taking a class on Archives concurrently with a practicum in the Spring as well.

If this may be interesting to you, here is a link that details what would be involved in a practicum. I am also happy to send along a cover letter, resume, and references. Thank you for your time and consideration.

Kindra Morelock

I should stop at this point and tell you what some of these terms mean, in particular what I am interested in doing with my degree because I know there are many people who, upon hearing Library Science, think (1) that's a paradox and (2) why do we need libraries when we have Google? The latter is something that I am not going to explore here since it deserves its own post and many people have done a better job than I ever could in defending libraries. However, what I'm hoping to do is Data Curation, which is the idea that you take the data and digital objects that are being created and make it so that people can actually:

• find it
• access it
• understand what it's about
• preserve it for the long-term

So instead of people doing all of this research and generating loads of data, writing a paper and publishing it and the data stays on their PC, I want to help assign metadata to it in order to describe it and make it so that people can find it, as well as putting it in a place where others can actually access it since if it's just on your PC or a department network no one outside of a small group of people can find it. So this extends not just to research but also to things like digitized photographs, newspapers, etc. which is where the Archives piece comes in.

ANYHOW (I know I probably lost at least a few of you):

She writes back saying she's interested in meeting with me and we put something on the schedule. Now, going into this meeting, I wasn't at all sure that there would be an opportunity for me here. They have a very small online archive, so I thought that maybe I could help them digitize some photos and put them online. I don't want to be a Reference Librarian, which is probably the most obvious fit for a small academic library, so while I was excited about the meeting, I was also not getting my hopes up. I prayed before the meeting and asked God that He'd open a way for me if there was an opportunity.

So, I go to the meeting and meet with all three of the staff (see, small library). We talk for a little bit about what I'm looking for and what a practicum is and what it isn't. We talked about the Archive and they didn't seem to think that there would be enough work to cover 100 hours for me to just do that. We talked about a few other projects and it was kind of sounding like it wasn't going to work out, at least for a practicum. And then one of the staff members mentioned that they were wanting to start up an Institutional Repository.

!!!!!!!!!!!

So, an Institutional Repository is just about the exact thing that I want to do career-wise (or a Domain Repository, which is similar). And as we started talking about it, I was getting more and more excited about it. They don't have anything right now, so I would basically be helping create this bad boy from scratch. Like I'll be in the planning meeting and I'll be able to get my hands dirty in D-Space, which is the software that 90% of the Institutional Repositories in the US currently use. And all of this in a space that I both have some knowledge in (Child Development) because of my research over the last few months and interest in the subject matter unlike Astronomy or Nuclear Physics! I love that I will be supporting the institution that helps support my child and others like him. AND it's right downtown (I miss working downtown!!) and a block away from XOCO which is going to be pretty dangerous for my wallet.

I am SO SO SO excited about this. This is going to be really great on my resume and totally worth me paying for the experience that I'm going to be getting. Chris and I had lunch at the aforementioned XOCO after my meeting. After listening to me talking way too fast in my excitement about the meeting he said to me "You know Kindra, your life isn't easy but it is blessed."

Make me know the way I should go for to you I lift up my soul. - Psalm 143:8